RecruitingOBSERVATIONAL

Investigating Management, Perspectives and Attitudes Towards Care in Takayasu Arteritis

This study aims to understand what it's like to live with Takayasu arteritis and how doctors in the UK manage this condition. Researchers will ask people diagnosed with Takayasu arteritis about their experiences, symptoms, treatments, and any concerns they have. Separately, doctors who treat this condition will be asked about how they diagnose and treat it, and any difficulties they face. The information gathered from these online questionnaires will help researchers learn more about Takayasu arteritis. This understanding can then be used to improve support, diagnosis, and treatment for patients affected by this rare condition across the UK.

At a glance

Status

Recruiting

Sponsor

University of Edinburgh

Enrolment target

Start

01 Oct 2025

Estimated completion

15 Mar 2027

Takayasu Arteritis Takayasu Arteritis (TAK)

What is this study about?

This study is called "Investigating Management, Perspectives and Attitudes Towards Care in Takayasu Arteritis." It's all about understanding a rare condition called Takayasu arteritis. The researchers want to get a full picture of what it's like to have this condition and how it's currently being treated here in the UK.

To do this, they will be asking two main groups of people to share their experiences: patients who have been diagnosed with Takayasu arteritis, and doctors who treat people with this condition. By hearing from both sides, the study hopes to find out what's working well, what could be better, and any challenges that people face.

The information collected will help researchers and doctors learn more about Takayasu arteritis. This knowledge is really important because it can lead to better ways of supporting, diagnosing, and treating people with this condition in the future.

Key takeaways

The study focuses on understanding Takayasu arteritis from patient and doctor perspectives.
Participation involves completing an anonymous online questionnaire.
The patient questionnaire takes about 25 minutes.
Your input could help improve care for Takayasu arteritis in the UK.
You must be an adult with a formal diagnosis of TAK and live in the UK.
Participation is voluntary, and your answers are anonymous.

Who may be eligible?

If you are an adult (aged 18 or over) and have an official diagnosis of Takayasu arteritis, you might be able to take part in the patient survey. You also need to be living in the UK and be able to understand what you're agreeing to.

If you are a doctor in the UK and are involved in making decisions about or managing the care of patients with Takayasu arteritis, you could take part in the doctor survey.

You wouldn't be able to join the patient survey if you are under 18, haven't been officially diagnosed with Takayasu arteritis, or live outside the UK. Similarly, doctors not involved in treating this condition or living outside the UK wouldn't be eligible for the doctor's survey.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Are you 18 years old or older?
Have you been officially diagnosed with Takayasu arteritis?
Do you live in the UK?
Are you willing and able to give your consent to take part?

Answer every question to see your result.

What does participation involve?

If you decide to take part as a patient, you would be asked to complete an online questionnaire. This questionnaire is anonymous, meaning your answers won't be linked back to you personally. It's expected to take about 25 minutes to complete and will ask you multiple-choice questions and some short-answer questions about your experiences with Takayasu arteritis, your symptoms, treatments, and any concerns you have. There are no visits, medications, or further follow-ups involved after you complete the questionnaire. The total duration of your participation would be just the time it takes to fill out the survey.

Potential risks and benefits

By sharing your experiences, you could help doctors and researchers better understand Takayasu arteritis, potentially leading to improved care for others in the future. As the survey is anonymous and online, there are very few direct risks. You might find some questions bring up personal thoughts, but you can choose not to answer any questions you don't feel comfortable with. Remember, taking part is completely voluntary, and you are free to stop at any point without needing to give a reason.

Locations (1)

Some site locations are approximate. We're improving this — please verify with the trial team before travelling.

University of Edinburgh
Verified postcode
Edinburgh, United Kingdom· Recruiting

Common questions

What is Takayasu arteritis?

Takayasu arteritis is a rare condition that causes inflammation in the large arteries of the body.

Who is running this study?

This study is being run by researchers looking to gather information about Takayasu arteritis in the UK.

Will my answers be kept private?

Yes, your answers to the patient questionnaire will be completely anonymous, meaning no one will know it was you who provided them.

How long will it take me to complete the questionnaire?

The patient questionnaire is expected to take about 25 minutes to complete online.

Do I have to take part if I'm asked?

No, taking part is entirely your choice, and you don't have to participate if you don't want to.

How to find out more

Alexandra Armstrong

a.armstrong-9@sms.ed.ac.uk +447445695898 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.